Minnesota Medicine April 2011 : Page 44
clinical & health affairs | burden the patient and his or her family because of frequent hos-pitalizations, pain, and high costs. Ideally, surrogates would weigh the benefits and downsides of those treatments in the context of the patient’s expressed de-sires before deciding how to proceed. But often, circumstances complicate this already-difficult task. In some situations, bereaved family members perceive that the quality of care being provided for their loved one is poor and understandably are frustrated. 4 In others, families tell health care providers to “do everything pos-sible” to sustain life more because of the distress they feel than because they are attempting to articulate the patients’ health-care-related goals, values, and preferences. 5,6 As in the Barnes case, the appropriateness of the surrogate’s decisions may be questioned. In all cases, reconciling the surrogate’s decisions with the perceived authentic wishes of the patient ought to be the goal of everyone involved. However, this is often challenging, as the process of surrogate decision-making is highly nuanced and the resulting judgments need to be contextually informed. 6 Here, we offer practical suggestions on how to approach and manage these situations. Table Standards to Help Surrogate Decision-Makers What a surrogate believes the patient would want in a given situation. Surrogates should ask themselves: “If the patient could wake up for 15 minutes and understand his or her condition fully, what would he or she tell you to do?” 1-3 What “reasonable persons of good will would consider acceptable in similar circumstances. ” This may involve negotiating the overall goals of care. 1,4,5 Based on a surrogate’s knowledge of a patient’s values and interests as opposed to what an incapacitated patient might want in a given situation. 6 Substituted judgment Best-interest standard Substituted interests R E F E R E N C E S 1. Braun uK, naik aD, McCullough lB. reconceptualizing the experience of surrogate decision making: reports vs. genuine decisions. ann fam Med. 2009;7(3):249-53 2. Berger Jt, Derenzo eG, schwartz J: surrogate decision making: reconciling ethical theory and clinical practice. ann intern Med 2008;149:48-53. 3. Kuczewski M. from informed consent to substituted judgment: decision-making at the end-of-life. HeC forum. 2004;16(1):27-37 . 4. Holm s: autonomy, authenticity, or best interest: everyday decision-making and persons with dementia. Med Health Care Philos. 2001;4:153-9. 5. Kopelman lM: the best interests standard for incompetent or incapacitated persons of all ages. J law Med ethics. 2007;35:187-96. 6. sulmasy D, snyder l. substituted interests and best judgments: an integrated model . of surrogate decision making. JaMa. 2010;304(17):1946-7 Planning Ahead Research suggests that when patients’ values, goals, and wishes re-garding medical treatment are respected, they receive better care, particularly at the end of life. 7,8 Respect for patient autonomy re-quires clinicians to make sure that patients are allowed to articu-late their wishes regarding what they want in terms of care: Do they want their providers to do everything possible to keep them alive? Do they just want to be kept comfortable until the end? Patients should be encouraged not only to articulate but also to document their values, goals, and wishes and to share the result-ing documents with appropriate parties (loved ones, clinicians, etc). 9 This process of advance care planning should be flexible and continuous as patients’ health and circumstances are ever-changing. Advance directives are one component of advance care plan-ning. 9,10 Both instructional directives (such as the living will) and proxy directives (such as the durable power of attorney for health care document) commonly include the appointment of a surro-gate decision-maker. 9 This designated surrogate is charged with assuring that a patient’s wishes as articulated during the advance care planning process are carried out in the event the patient is incapable of expressing those wishes. In addition, Minnesota has a POLST (Physician/Provider Orders for Life-Sustaining Treat-ment) initiative to assist patients with life-limiting or life-threat-ening illnesses in making their end-of-life preferences clear to their surrogate. 11 More information and resources can be found at www.polstmn.org. Options When Wishes Are Unclear Despite the potential benefits of having an advance directive and the related discussion, the number of people completing advance 44 | Minnesota Medicine • april 2011 directives remains low. 9 As a result, many patients’ preferences regarding aggressive and life-sustaining treatments may be un-known or unclear. Physicians, therefore, often find themselves working with surrogate decision-makers who must guess what the patient would want. Physicians should be aware of a number of concepts that may be useful in such situations. One is “substituted judgment.” The idea is to have the sur-rogate articulate what he or she believes the patient would want in a given situation (Table). As suggested in the Quinlan decision 12 and by Quill, 13 surrogates should ask themselves, “If the patient could wake up for 15 minutes and understand his or her condi-tion fully, what would he or she tell you to do?” This question can help a surrogate focus on the patient’s values, goals, and prefer-ences—not theirs. It may be especially helpful when a surrogate’s decisions appear to be incongruent with how the patient, when he or she was capable of making decisions, lived his or her life or interpreted his or her illness and finitude. Another approach is to apply the “best-interest standard,” which attempts to have the surrogate decision-maker focus on what a “rational being,” a group of knowledgeable or interested persons, or society would perceive as a good outcome for the pa-tient. Yet another useful concept is that of “substituted interests.” 14 With substituted interests, the patient’s story or narrative, as ex-pressed by the surrogate, is emphasized. Clinicians ask the surro-gate about the patient—their hopes, beliefs, interests—rather than about what the patient might do in a given medical situation. The
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